Tuesday 30 April 2013

TAF....

Posted off my order for the trampoline, cant wait to see DS bouncing on it!
Hope it comes quickly!

A update on DS behaviour issues: behaviour seems to have improved a little since I've put him back on his medication but were still seeing some hitting and grabbing especially in school so after doing some digging I've requested for a TAF to be set up.

A TAF is a Team Around the Family and as far as I can see (and believe me I've done lots of digging around) this seems to be the only route for Social Care to offer any support.

I've been into school and chatted to the Family Support Worker who is going to work with me on it, she will be the lead person for the TAF and is going to get this underway straight away.

I'm guessing that my TAF will consist of obviously myself, the school support worker, CAMHS & a representative from Social Care but I am only guessing at this point.
I'm hoping that this will benefit both myself and DS,the family support worker is great and I know that she and the school will do everything in their power to support us with this so I do think its worth a go.

If I feel that this is'nt working then I will just withdraw it, we start the assessment for it this week.

Anyone else had a TAF set up? If so, how did you find it? Was it beneficial?

Sunday 28 April 2013

Jumping for Joy....

DS loves jumping and bouncing on anything that is remotely a bit squishy.

He jumps on beds, the settle, cushions, bare floor - anything!

DS jumps when he is happy, if he is distressed, agiated, upset then there is no jumping so the fact that he jumps alot throughout the day is a very good sign.

Im our previous house I bought him a outdoor trampoline which he loved! I found that when he was distressed then bouncing it out on the trampoline would help calm him down, it would sometimes take that edge of his anxiety.

We moved 6 months ago and left the trampoline as it was so battered and not in the best state that I decided we would get a new one.

I applied to a charity that part funds equipment for child with brain related conditions such as autism and ADHD  and after alot of to-ing and fro-ing with myself, our GP and DS school teacher providing reports that DS hugely benefits from bouncing (all standard procedure) I recieved a letter from them that we have been partly funded for a brand new shiny outdoor trampoline! Yay!
I can choose from a 8ft, 10ft and 12ft, the larger the trampoline the more cash I have to put towards it so today I am going to measuring where its going to go in the garden and deciding on which size.

I can wait to see DS doing his happy jumping on the trampoline as I know hes missed having one.

Tape measure at the ready.......

Friday 26 April 2013

Our Lovely Laundrette....

Well DS behaviour has improved slightly.
I'm not sure if its to do with me putting him back on his Movicol for his bowels or not but since hes been back on it Im monitoring his behaviour very closely and asked school to do the same.

With DS only saying a handful of words which believe me is great that he does, he does not yet have the ability to tell me if anywhere hurts which I'm hoping in time he will be able to so for the time being its guess work and process of elimination.

Today, I made DS a 'mini laundrette' he is thrilled with it!
I began doing a little bit of role play with him using Upsy Daisy as a customer coming into the laundrette to wash her blanket. DS immediately took the blanket off her and put it in one of the washing machines and turned it on and I sat Upsy Daisy down using my silly voice for her that she was going to sit and wait for her blanket to be washed.
I  could see DS was enjoying this so I brought in another character with some washing who again he took the washing from (a clean dishcloth) and popped it into another one of the machines. I then slowly moved away to watch how DS played, he was using lots of language which is fantastic - I can see this game going on for hours!
I better stock up on some more batteries before any of them start running out and the laundrette becoming 'meltdown city'!

Wednesday 24 April 2013

Asking for Help....

Well I'm getting there, I'm feeling more like my old self.
I can't help thinking that being poorly was contributed by the stresses of DS's behaviour rearing its ugly head.

Therefore action needs to taken...and quickly! but to tackle this head on I need support and its this that is the tricky bit.

Ideally as well as working on DS's behaviour which is going to take time I also need a break, some respite for a few hours.

So I rang my local NAS branch, Parent Partnership and popped in school to speak to the head about options and possible solutions.

I even rang Social Services and requested a assessment to gain some possible support. This was done and a week or so later I was told that I was meeting all of DS's needs more than sufficiently then I didnt meet the criteria for support.

I sat on this decision for a while then phoned them back and spoke to a lovely Social Worker called Jim. He understood me but also said that he was struggling to find any help for me. Apparently unless your harming your child or neglecting him/her then there is little out there for you.

Over the course of 2 days I had several conversations with Jim and found him helpful but also different, especially the way he ended our phone conversations. I would be talking and he would do a little laugh, say take care and hang up! He did this on every phone conversation which really amused me.


Jim: Hi Amanda, its Jim from Social Services. I've had a few more ideas where you may be able to go for some support.

Me: Hiya Jim, great thanks. Are you okay to email me the details as Im out and about at the moment and dont have a pen on me but.....

Jim: *laughs* take care

Hangs up.

Jim was'nt rude, in fact I quite liked him and looked forward to hearing his little laugh knowing that our phonecall was coming to a end.

Anyway, Jim suggested a buddy scheme which I'm going to look into so will let you know how we get on with that one.

In the meantime DS has decided to take his two favourite things and combine them together! Weeing and washing machines!

Oh yes! At the min DS is loving weeing on things like plants and flowers in the garden. We've also known him to wee in the sink. I have identified that the places he wees is associated with water, so for example, he has seen me watering the plants in the garden and obviously the sink is connected to water.
But today he came in from school opened the washing machine door and had a wee in the drum! This is a new one for him but I of course I can see the connection to why he did it.


Just hope he only does that to my washing and not anyone elses.....




Monday 22 April 2013

The Dreaded Lurgi....

I'm poorly and am fit for absolutely nothing today
Blogging will resume shortly

Sunday 21 April 2013

Would you like any help with your packing?....

First of all I would like to say a big welcome to my first follower - Nicola!
If you would like to follow my blog please click on the icon at the side of this page - thank you.

Well today was spent bag packing.
Packing strangers shopping in our nearest Asda, we were raising money for DS's school for a brilliant special needs play area.

See how I'm poised with my bucket and shopping bag...
It was myself, a few other members of the PTA committee, some staff and a couple of siblings of the children that attend the school.

I shared a place packing with Rhiannon. Her brother Lee attends the school and she chatted away to me whilst packing - such a little love! she was a joy to be with for the 3 hours.

Here is Rhiannon and Lee


We decided to call it a day after the store started to die down with customers but we feel we did well - especially the children!

So straight from there I went and bought some shrubs to plant in the garden, with DS being with Daddy I may as well make the most of doing some jobs I wouldn't be able to do with him (well not easily anyway).
I finished just as it started to heavily rain - phew!

Right I will have a quick cup of tea and a sit down before DS comes back in and it will be all hands on deck as he will be:

Tired = hardly any tolerance levels = meltdown.

My personal mission on a Sunday is to bath him and get him to bed as smoothly as possible. To be honest I have a very low success rate at this but I blame Daddy for tiring him out so much on a Sunday that he has no patience or tolerance for anything! Ha
Ive also noticed that Daddy shoots off for this time....not daft is he?




Saturday 20 April 2013

Bring me Sunshine....

Today was a sunny day - Yay!!
 So without a moment to lose, we packed a bag of drinks and fruit pots and other yummy things that DS likes, jumped in the car and went out for the day!

We decided to head to Speke Hall as Ive never been before and with my Dad being from around that neck of the woods I really wanted to go.

Me and my Mum in front of Speke Hall.

As we were queuing up I noticed the engine house with its fast spinning wheels which I knew would catch DS's interest
We thought better than take DS around a old house with very delicate furnishings so we stuck to exploring the gardens and play area.

Whilst on the play area, DS was just about to pass a little girl on the wobbly bridge when she let out a scream because she was nervous on it, with DS being very noise sensitive he had grabbed both her pig tails in a instant and was yanking them!
I was rushing to her aid telling Luke to 'stop'! with the little girls Mum trying to loosen DS's grip on her daughter's hair.
I immediately apologised and quickly explained his sensitivity, she was lovely and kept telling me it was fine and not to worry! She even put her arm around me at one point telling me that it was okay, I was welling up at this lovely persons kindness, she really was so nice and understanding.

We then moved DS away from the play area and took him to some nearby woods which were quieter
Not long after this photo was taken, he tried to attack another two children for the same reason - they were shouting.

It was impossible.

I decided that it was probably best we leave the grounds and move on.
I was trying not to be deflated but its hard when your nervous about your child around others and you can't relax.

We then moved onto a nearby retail park, Daddy popped DS in his pushchair and took him to Curry's to have a look at the washing machines whilst me and Mum went for a coffee.

When we all met up again shortly afterwards, Daddy said that DS had been fine and seeing the washing machines had lift his mood instantly.

The rest of the day went smoother, we picked up a take away on the way home and settled down to watch 'BGT'


Happy Birthday....

Yesterday was Daddy's birthday.

DS likes birthdays. He gets them.

He knows with birthdays that there is a cake with candles, we sing the happy birthday song and blow the candles out.

He enjoys them.

So yesterday whilst he was at school I went and bought Daddy a cake and a little present on DS's behalf.

Daddy was going to call in on his way home from work so we could do the birthday celebrations, he would usually have tea with us but couldnt this time as he was attending a charity night.

I told DS that it was Daddy's birthday and showed him the cake.

So when Daddy arrived we got straight to work - DS doing his happy jumping whilst we sang and helping Daddy blow the candles out!
Then DS said 'candle'!
We've not heard him say that word before! He wanted me to light the candles again!
So we did, we sang happy birthday again and DS blew out the candles.

DS said 'candle' another 4 times, so we did it again rewarding him for saying the word but on the last time, I said for DS to sing and he did!

He sang Happy Birthday all by himself! Wow! Wow! Wow! then casually blew out the candles!

We all cheered and said what a clever boy he was! He was very pleased with himself!
What a fantastic day I thought to myself later.......but I had thought to soon.

This is a perfect example of how a great day can turn not so good. I promised that this would be a honest blog of raising a child with ASC and so it will.

Whilst bathing DS, I told him it was time to brush his teeth, he immediately hit my face for no apparent reason. This isnt something he doesnt like doing, he happily accepts this as part of his routine.

I told him 'No'! and continued to brush his teeth, he pinched me.

I got him out of the bath, dried him and as I was putting his py-jamas on he hit me again. I left the room in silence and went into the bathroom.
He followed me in and hit me again but the way he caught me made my face sting, which made me shout at him!

My Mum had to take over for a min, whilst I got myself together.
DS was crying wanting me but everytime I bent down to him to give me a hug he would strike me again.

This is one of the most difficult things for me with DS as I dont feel Ive found a effective way of dealing with this behaviour as of yet.
Ive looked into it many many times and have tried different strategies but none have felt right or felt they had a positive impact on DS.

Ive even tried hitting him back but he laughs and thinks its a game Im playing with him so I stopped that.

The National Autistic Society recommends:

say in a calm, monotone voice, without showing emotion: “(Child’s name) hands down/feet down. No pinching, slapping, kicking” and then redirect them.

which is what Ive been doing for a long time.

This for me is one of the loneliest & distressing parts of parenting a child with autism as its hurtful when your child attacks you as if they hate you.

So today went from a good day to bad day resulting in me going to bed upset.

Thursday 18 April 2013

Shortening of the hair....................

DS has always struggled with haircuts.

I remember taking him for his first haircut and him screaming the place down (pre-diagnosis)

It will be easier next time I thought, but it was not.

The whole experience was upsetting for him and often I would end up getting upset too at seeing him so upset.

DS upset = Mummy upset = DS even more upset = Mummy even more upset too

It was a vicious circle.

The last time I attempted to get him even near a pair of scissor, I remember very clearly. I had made the appointment at a good time during the day for DS.

It was made for after his lunch and nap so he would be rested and hopefully more tolerent.
So i strapped him into his car seat, gave him lots of reassuring smiles and started the car.
As I was driving DS was giggling and making happy noises.......until we turned into the road the hairdressers were. I was watching him intently now, his body froze with fear and he started crying, pleading almost for us not to go in.
At once, I decided that I was no longer going to do this to him, he obviously dreaded this and no more was I going to put him through this ordeal so i immediately turned the car round drove home and comforted him til he seemed okay and back to his normal self.

So for the next couple of years, I cut DS's hair, either when he was asleep or I did it very quickly when he was in the bath but I was no Nicky Clark!!

Then recently someone suggested a fab hairdressers just for children, it was local but the difference with this one was that each child has a TV screen and they could watch a DVD whilst having their hair cut or play on the Wii.
I thought that as it been a few years then I could give it a go and at the first sign of DS distressed then we would just simply leave.

So as we waited for our turn, we played with lego with me concentrating on staying calm and relaxed as DS picks up on my emotion


What I'm about to say next does not happen very often..... but I was lost for words.....I think I may have opened my mouth at one point to try to speak but nothing came out......DS seemed to enjoying it!!
The hairdresser was lovely and I was surprised to learn that she had a good understanding of autism - I was very impressed!
 
DS was more than excellent and even when she had finished he still stayed in that chair watching his washing machine DVD and because he was so good he was treated to look at the salons washing machine - RESULT!

A happy DS = a happy Mummy!

What a Superstar!

Wednesday 17 April 2013

Little Obsessions.......

Its very common for children with autism to have obsessions.

They tend to be things like trains, Thomas the Tank Engine, cars, Mickey Mouse, aeroplanes......

But no, not DS!

DS's obsession is washing machines!

He fell in love with them at a very young age and it has been his obsession ..like forever!

He loves the spin the most and he loves the drone noise it makes

If we go anywhere new, the first thing he does is hunt down the washing machine - he seems to have a sixth sense and knows where it is, wether its in houses we've never been before or holidays cottages etc - he just knows!


I feel this is important to DS therefore Ive never discouraged it, as quoted from the National Autistic Society:

Obsessions, repetitive behaviour and routines can be a source of enjoyment for people with an autism spectrum disorder (ASD), and a way to cope with everyday life.


Wonder if this will stay with him up to a teenager.....suppose theres a thin line between obsessions and slave labour is'nt there?? Ha!

Introduction....

Hello and welcome to my brand new blog!

I thought I would tell you a little bit about me....

Im a thirty(ish!) Mum of one.

I have the most beautiful son who is 5.

DS has a autism diagnosis which was quite early aged 3, he was non-verbal until about 12 months ago but now is saying a few words which is massive progress!

Im divorced from DS's father but we maintain a good relationship as we have something very important and precious to us, in common - DS!

Ive created this blog to record our ups and downs - the great bits and moments in relation to raising a child with ASC. The moments your child stuns you with something you never thought he could do in all your wildest dreams, milestones that you thought you would never see, moments where a lump forms in your throat with sheer proudness you have never ever experienced before and of course the not so good parts, the difficult bits, the days you just want to fling your hands up in the air and admit defeat, give up completely and sob until you can sob no more.

My views and opinions on this blog are not from a professional perspective, they are personal to me.

Well hope you enjoy reading!